Our beautiful daughter Emersyn Paige passed away from SMA Type 1 on April 7th,2009 at the age of 7 months old. This blog is dedicated to her life, legacy and spirit and our journey as a family through grief.

Saturday, March 20, 2010


I am constantly looking for books for bereaved parents. I have read and read and read some more since Emersyn passed away. It’s like I am searching for anything, something or someone to connect with so I don’t feel so isolated, angry and lost. Many books that I have read have been helpful and many have enraged me with their academic and prescribed patterns of healing that one should follow after the loss of a child. I need to “out” an old and frustrating myth that I think really messes with people’s heads while grieving and that is, THERE ARE NO FIVE STAGES OF GRIEF that you go through and then you are all better!! The idea that there are five stages of grief (shock, denial, bargaining, anger and acceptance) that you experience is an unfair and unrealistic guide for any person who is grieving to follow.

Grief has dimensions and is complex in nature. It twists, turns and loops and gets a bit better and then fifty times worse and so on and so on. It is unrelenting at times and always unpredictable. You don’t get over grief; you try and try with all of your might and every ounce of your energy to live with it. You become an expert at devising coping strategies to get through the dinner party, a day at the office, grocery shopping or the next hour for that matter. There is no time limit for when we should start feeling better. It is kind of liberating to think that I am not going to be in last place in the race for wellness. I am changed forever and yes eleven months later, I think of Emersyn all of the time to the point where my brain becomes exhausted trying to remember everything about her. Being a bereaved parent can be just as exhausting as parenting a child who is living. A magnetic force pulls me further and further into myself in a way that on the surface seems totally and utterly self absorbed. I am learning that this self absorption is not selfish, but necessary for survival and inevitably out of my control. When I forget to ask how others are doing, or I don’t return a call it is not because I am lazy or inconsiderate it is because my brain is on constant overdrive thinking, processing, loving and missing my little girl. I am forever searching for you Emersyn. I see you in every bird that flies by, in songs that appear on the radio at just the right time and in every lady bug that lands on my shoulder. Funny how I never noticed lady bugs until you passed away.

Instead of fighting this pain with the “power of positive thinking” I need to let it take me down, deeper and farther into areas unknown. It is by walking into this darkness that my instincts tell me I will find little strands of light and healing. If it were as easy as saying “today I will be happy and strive to do and feel only good things” I would not need support groups, books and constant help from my family and friends to cope with this kind of suffering. The true battle is not with pain, it is with myself to resist it. Sometimes we do need to pick ourselves up and brush ourselves off and think “positive thoughts” to bring us out of our funk, BUT this is not one of those times, this is not just a funk. The loss of my child is so much bigger than me and my ability to outthink the pain. I have to accept that I am going to feel really really bad for a really long time before I start to feel more frequent and longer breaks from the hurt. A fellow bereaved mom sent me a very wise quote that talked about how it is honourable and respectable to grieve and mourn and hurt over the loss of someone we love. Honour and respect, two big things we as parents strive to teach and model for our children. I don’t want to feel better right now, I don’t want to be “happy” right now, not because I am punishing myself, not because I am wallowing in self pity or simply being negative but because I genuinely need time, lots and lots of energy and time to process this. Emersyn died. My beautiful, smart, charming funny and enormously loved little girl died, and I deserve to have an unlimited amount of time and support to process this terrifying and heart crushing fact. I must humble myself, quiet my thoughts surround myself with safe people and surrender to this journey. This is not a mind over matter test that I must drag and push myself through. I have to trust in this experience however painful and excruciating as it may be because if I do not I will miss the whole point. The truth is I do have hope left in me that one day I will feel joy and happiness again but in order to truly feel that I must do this.

Monday, March 8, 2010

Driving Home......

Exactly one year ago today Emersyn went in for her g-tube surgery. Handing our smiling and happy baby over for a feeding tube when she was only 5 months old just about killed us. She was losing her swallow quickly so we had to make that gut wrenching choice or run the risk of her choking to death when she was nursing. It's funny how your mind sets a mental clock of things that were and things that might have been. As I was driving home from work the other day I just kept thinking that I should be picking up Emersyn from daycare and bringing her home to play with me before Daddy gets home.

I became overwhelmed with my grief as I realized that I was driving home to an empty house that should have been filled with my 17 month old daughters voice saying "hi mama"! I will never forget having to email our future daycare provider when we found out that Emersyn had SMA and explain to her that we would not need Emersyn's spot for the following year in daycare because she was dying. I don't think I can even come close to describing what it feels like to have my daughter taken from me. The anxiety and despair that it creates on a daily basis must be unimaginable for those who have not gone through this.